Re: Rosy/all- Vent about scheduling w/ Genetics

[Guest guest]

Thanks. Happy New Year's to you too (and to everybody!)

I am a little perturbed about not getting some of my appointments scheduled

as Dr. Whiteman is so bogged down he doesn't have time to sign a paper

saying to test for certain things! Both the pediatrician and we wanted

ZIpporrah to have some heart testing done as she has STILL never had any

done, even though she has had several occasions of heart rate drops down to

the 40's! I am frustrated to no end about this as I asked over a month ago

for them to be scheduled and I called them weekly (and more) to see if they

had been scheduled and their response was always, " We're waiting on the

paperwork from Dr. Whiteman so we can schedule it. " That and after over 9

months we STILL haven't heard anything back from Zipporrah's muscle/skin

biopsy and am wondering if it has been lost somewhere and even at our last

meeting Dr. Whiteman was puzzled and promised to look into it (over a month

ago) and I STILL have heard absolutely nothing. We can't get in to see him

this time either as they are now too booked as they didn't get the paperwork

from him quick enough either. We had some time together last visit, but we

were inpatient and not as organized and couldn't discuss as much and I am so

frustrated about not being able to see him this trip cause I was hoping to

NOT return to Mayo for at least 3-4 months from this visit. Do I really

have to wait another 3-4 months only to hear he never checked into the

biopsy because he is WAY too busy as he is the only full-time geneticist and

has NO NURSE!!! Mayo really needs to do something about that!!!

I am almost in tears over this issue because I really do love to see

Dr. Whiteman and trust him so much and need him as part of the team, but

with him so busy, he feels more like a silent partner that is there, but not

really reachable.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Mayo trip Sun.-Thurs. Jan. 2-6) Anyone going?

> Darla

>

> Happy New Year

>

> Travel safely. Hopefully this will be a productive trip for all of you.

> Keep

> us posted.

>

> Best regards,

> rosy

>